Endometriosis Stories - Page 18

Jonelle Trinidad and TobagoMay 2008

Very painful periods ....My story started when I was 11 years old. Ever since my first period I have been having severe menstrual pains, but my mother told me that this was normal. I continued to believe that this was part of "becoming a woman" until a nagging feeling told me that something was wrong. I then persuaded my mom to take me to the doctor when I turned 18 who referred me to an OBGYN. It was then I was diagnosed with Endometriosis.

I was scared. I had no idea what this was about and the doctor wasn't very clear on the explanation, so I did my own research. Seeing that I was not even sexually active, I could not understand how this would happen. The doctor recommended that I do a Laparoscopy to properly diagnose the condition and at the same time, have the tissue growths removed. Things were fine for 2 months after the surgery, but then the pains came back. I was so frustrated I began to cry.

My period was so painful I started to have severe lower back pains, nausea, severe abdominal cramps which painkillers did nothing for me, vomiting, large blood clots and heavy bleeding which got me extremely concerned and severe mood swings a week before my period. The doctor then prescribed Depo-Povera which made me gain excessive weight, which I was not happy about. I'm 5 ft 2 and I gained 25 pounds within 2 months without eating! I told the doctor about my concern and I was switched to various birth control pills which my body became immune to after about 3-4 months.

I was so frustrated, that I have switched doctors 4 times. I also think that doctors are so matter-of-fact with this condition that they have no empathy and treat it as though this is something I have to live with-end of story. I also went to a doctor in another country, but the results remained the same. I have had 2 surgeries over my short life of 28 years, and several of the doctors informed me that if I wanted to have a child I should try now.

I am no longer in a long-term relationship and that is not an option for me right now as I am studying and working, however when I am ready in the next 3-4 years, I am worried that I would not be able to conceive. Countless times I had intercourse with my ex-partner without a condom and missed my period, but the tests always came back negative- to my disbelief. I have since stopped taking birth control altogether seeing that I am not sexually active at the moment and for now my weight is under control.

I have been going to the gym for years, but it is only now I have finally been able to maintain my weight. The exercise helps sometimes, but I am still in severe pain. 3-4 days out of my seven day-cycle I'm in pain and about one week before that, a lot of discomfort and tiredness. I feel as though I only have 2 weeks to my sanity every month. I stay home from work every month because of it. I felt as though I've tried everything, but nothing seems to work. It's good to know that there are people out there who I can relate to with this condition and that I am not alone. Doing this letter was very therapeutic for me as I have never spoken about my condition to anyone at length. If anyone has any suggestions out there from their experiences, please let me know.

Charie WorleyUnited StatesMay 2008

Many visits to see specialistI have been suffering with endometriosis for nine years. When I was 19, I went to the doctor to have a regular pap smear. The results came back abnormal, and I was referred to a specialist. Then, when the results came back from the specialist, I was diagnosed with severe dysplasia. A portion of my cervix was cut and I was fine. After a few months, I started to have pain in my left abdominal area. At first I thought I was imagining it, but it got worse, especially during my cycle time and intercourse.

I went back and forth to the doctor for months and months, which led up to about two years. They told me nothing was wrong, but I knew better. Therefore, I changed my doctor. Since then, I have had four laparoscopies because I was having pain every year. My last one was in June of 07. My left ovary was taken out because it was destroyed by endometriosis. Now, the pain is back and it's on the same side. Sometimes I just cry because I don't know what else to do.

I am so scared that endometriosis will destroy my right ovary also, which will hinder my chances of ever having children. I am so tired of pain and surgeries. I'm tired of doctors that keep telling me the same thing "there is not much we can do." Pain has been running my life for nine years, and the only thing I can do is cry because no one seems to understand. If someone is out there who can help, please help.

Jessica Engles United StatesMay 2008

Just had fifth surgeryI found out that I had endometriosis about a year ago and I just had my fifth surgery about 3 days ago. I had a tubal in April 2007, the day after I had my son. Well, after about 6 weeks I started hurting really bad, I found out that I had 4 cysts so I had a laparoscopy done, and that is when I found out that I had endometriosis, so my doctor went ahead and removed it.

A month later I started hurting really bad again and I had a d & c and thermachoice done. That helped for a couple of months. My pain came back so my doctor took my uterus out, my pain went away for like a month. Well, I started hurting again, I went to the doctor and they did a CT and found nothing.

I finally went back to the doctor a week ago and they decided to do surgery again. He told me that he was going to remove the endometriosis, my appendix, and possibly my left ovary and left tube. When I went into surgery 3 days ago, he ended up taking out my left ovary and tube, and said that I was covered in endometriosis. He removed as much as he could. I have to go back to the doctor in 4 days to get my staples taken out and to get a shot to kill the rest of the endometriosis, but I am afraid after reading everyone else’s stories that it will not cure it forever.

It basically has ruined my life and it sucks. It hurts to have sex and hurts and to do anything, I’m always tired. I get in a bad mood when I hurt and then my husband and I end up fighting. We have been married for a little over 2 years, and I don't want this to ruin my marriage. My doctor said that I have had endometriosis for a long time, but he didn't understand why I didn't have any problems getting pregnant.

I have 2 girls and 1 boy, plus 1 step-daughter and 1 step-son. I didn't have one bit of a problem getting pregnant, in fact I was on birth control all 3 times. So even though you have endometriosis it doesn't mean that you can't get pregnant, and I know that from experience,

It causes problems for some women and for some women it doesn't. If anyone wants to talk just e-mail me at: engles.jessica@hotmail.com, i am willing to talk to anyone. endometriosis does hurt really bad!!! I have been on pain meds. for a while and sometimes they don't help.

Jessica MastersUnited StatesMay 2008

Hello fellow Endometriosis Friends! Good news. I saw Dr. Liu in Chattanooga, TN to have him cut out the endometriosis in April of 2007. It is now May 2008 and I have been doing very well. He excised endometriosis from my bladder, bowel, peritoneum, utero-sacral ligaments, ureters and appendix. This has given me TREMENDOUS relief.

I even wear my 5 little laparoscopy scars with pride. I am staying on a continuous birth control pill to help control pain and have to take anti-inflammatory meds on occasion for pelvic pain. I never knew I would feel this good again. I just hope it lasts! I have been able to go back to work full time, run 2 marathons and sleep an entire night through. My heart goes out to all of you with endometriosis.

Georgina Newark United KingdomMay 2008

Extensive endometriosisAfter 5 years of pain, I now have some answers! I have been to the doctors so many times, same with the hospital, over the last 5 years. But I was always sent away with no answer, I was told I was fine, all they said was I had IBS which I’m sure you have all been told the same. On one occasion I had blocked bowel, they sent me away with constipation tablets. I have not met one doctor or nurse that has not let me down they all have.

I was once rushed into hospital with mind turning pain on Monday the 4th of May. I spent the night in a+e and then was moved to a gyne ward. I will not even got into my bad treatment right now, so moving on, I then had an eternal examination and was later given a bed and told I would have a scan later that day. No-one saw me then until this scan, I was left in pain for about 7 hours, but like I said I will not go into that.

I then got taken for my scan, it showed I had a cyst on my right ovary and free fluid. So I was taken back to the ward and left again until the next morning. A doctor came over and said that I should not eat or drink cause she was going to take me to surgery. I waited all day with no food or drink, only to be told just after dinner had gone that I was not having surgery and I would be given pain killers and sent home.

I was gutted once again I was being pushed away with no answer, needless to say I kicked up a bit of a stink and after about 1 hour of crying and shouting the doctor agreed to make a appointment for me on the 24th of May.

It still was not what I wanted but better than nothing. He told me to stay one more night and go home the next day. But the next morning after yet another sleepless night from pain, the doctor came in and had decided to do surgery that day (I really do not know what changed his mind). So once again I’m nil by mouth and waiting for surgery. The surgery was only supposed to take an hour at the most, but I was asleep for nearly 3.

When I woke up I was in a lot of pain and I was kept in recovery for another 3 hours after the operation. The next day (thursday) I found out what had been destroying my life for so many years. They told me that they had removed the cyst on my right ovary and that my left ovary and tube had been damaged due to this illness. I also had endometriosis everywhere else including next to my bowel and intestine, hence the blocked bowel the year before !!!

Amazing what you can find when you look! This disease as you know was endometriosis and right now I don’t know how to feel. Happy I know what it is, sad cause I will probably not have any more children, lucky that I had 2 children while young before this got bad, angry at every medical person who has let me down, scared of how bad this is going to get.

Dee IrelandMay 2008

Narrowed colon caused constipationI have suffered from endometriosis for over 30 years. Doctors had been treating me for PMT and it was finally diagnosed when I went privately to a consultant who performed a laparoscopy operation and he diagnosed it and that was 20 years ago. I was so grateful to have a name for this awful pain and for the fact that it wasn't all in my head.

Any way to cut a long story short, I was suffering from really bad constipation and went a to my GP and was given every laxative in the book but none worked. Meanwhile my tummy was swelling and I was told it was because of the constipation. I was admitted to hospital for another matter, and the fortitude of having a very enquiring house registrar who inevitably saved my life.

Having undergone various tests she discovered that there was stricturing in my colon. I was admitted very promptly and underwent surgery to have part of my colon removed. The cause of this was endometriosis!!! It had penetrated through the wall of my colon therefore causing the narrowing of my colon. I've been told how lucky I was and how rare it was, and that this has never been known to happen before because endometriosis can attach to the outside wall of the colon but never penetrate it.

I just want to make other women aware of this because I had attended my GP for years and she (yes a woman) kept fobbing me off with constipation medication. To say I was very angry is an understatement. My advice to anyone who has any queries relating to their health, is to demand to be referred to see someone who can actually give you some answers, and not just guess what's wrong with you.

I now question everything and I've left my GP in no uncertainty that I will demand a 2nd opinion. Endometriosis is still with me and I still have to be treated for it but I believe no one can fully empathize unless they have experienced this dreadful disease.

Carly Australia

Diagnosed with severe endometriosisHi. I'm not sure why I am writing this story, I think maybe its so women who suffer this awful disease don't feel like they are completely alone in it. I'll start from the start. I am 27 years old, I was diagnosed with Endometriosis when I was 25. I also suffer from PCOS which is well controlled. I was diagnosed with endometriosis in March 2006.

I was suffering from abdominal pain and the doctors thought I had a haemmorhagic cyst. We waited for the pain to subside (which is what a cyst is suppose to do) but it didn’t. They then did a laparoscopy and found significant endometriosis. I was still in a reasonable amount of pain about a month after the operation so my OBGYN tried me on the pill for a month.

I bled the entire month and the mood changes were horrific, my poor husband!! We then started on a course of Zoladex injection every 28 days for 6 months. Finally, I thought to myself, something is working. I immediately felt better, I had no pain, no bleeding, my life was returning to normal.

After the injections were complete my OBGYN implanted an IUD, also known as "Mirena". It was awful... I cant explain how sick I felt. I had non stop bleeding for 7 weeks, cramping, bloating, and forget having intercourse... it just hurt too much. Finally my OBGYN agreed to remove the IUD and recommended that we start trying to have a family.

My husband and I had only been married for 3 months so this came as a surprise to us both. In Jan 2008 my endometriosis flared up even stronger than before. I ended up having another laparoscopy and this time it was more invasive and I had complications after surgery. All I remember was my OBGYN coming in the morning after the surgery and telling us "IVF. You have to do it now before it is too late." I couldnt believe what he was telling us. I kept thinking, Im 26 yrs old, don’t older women have to go through IVF? I'm too young, we haven’t really tried yet, blah blah blah.

So anyway.. we have been on the IVF trail for 5 months now. It's not a trail I would wish on anyone. We had my eggs collected in March 08, 29 collected and 19 fertilized. We have 10 frozen embryos at day 6. I got hyper-stimulation from the egg collection so we haven’t tried to implant yet. We are implanting in 2 days and I am having mixed feelings. I am hopeful but scared of getting my hopes up for fear of getting hurt.

We have had so many disappointments these last 18 months. I guess my message to anyone going through what I’m going through is this... Keep your head up, hang in there and it will happen. I don’t know when it will happen for us, I just pray it is soon. Meanwhile I remain ever hopeful..

JillianUnited StatesMay 2008

Constant visits to ERI am currently 21 years old. I have had pain for a year now, but now that I look back on it, I have been exhibiting symptoms for as long as I can remember. Right after my 20th birthday, I began having horrendous pains in my abdomen. I went to my college medical center and they suggest a trip to the ER to rule out appendicitis.

I had started a job waitressing and I had a hell of a time trying to carry trays and even certain plates. I had to take frequent breaks and obviously my employer did not like this, but were very supportive. I remember a particular slow Monday afternoon last August. I was at a table and had a sharp pain in my lower right side; I doubled over at the table. I ran to the bathroom and found blood all over my underwear. I then went to the hospital.

At this point, I had been to the ER twice and had an MRI and an ultrasound which showed nothing. I took an indefinite leave from work. After this episode the pains only worsened. I would be vomiting and lying in the foetal position, unable to move. I ended up back in the ER a third time, in the middle of the night, only to have yet more tests and another MRI done, which, again, showed nothing.

At this point, I had been bouncing between doctors. I saw a urologist (as my pain was also in my lower back) who didn't even do a single test and turned me away. I went to a gynaecologist who did the same thing. I was infuriated, frustrated, and sick.

My mother had had enough; this was way too much for a 20 year old to handle. Other doctors had only put me on strong pain meds, Vicoden, Percoset, you name it, I was on it. These only made the situation worse; they worsened my IBS and I became dependent. I finally switched primary care and found a wonderful nurse practitioner who actually listened to what I had to say. She did every blood test, pelvic exam, and urine sample, but everything came up inconclusive.

By this time, I was entering my 5th semester in college. I had missed so many classes because of the pain, that I was sure to fail that semester (which I did; I tried to take medical leave but my adviser wouldn't have it). It just so happens that my new nurse shared an office with a surgical specialist. One of these doctors specialized in gynaecology.

I was sent off to him and he was the best doctor I have ever seen. He was patient and he listened to every symptom I had. He tried to do a pelvic exam but my muscles were so spastic he could not. He said that my symptoms did not sound like endometriosis, but if I wanted to, I could have a laparoscopy if I wanted to be sure. Of course, I opted for the surgery.

By this time it was October, 7 months after my first sign of pain. I had my surgery scheduled and I was looking forward to it. As most of you know, a normal laparoscopy would have only lasted 30 minutes if nothing was found; my mother went in thinking that that would be it. I came out of the OR after two and a half hours. After my recovery, I had smooth sailing for several months. I am on a new birth control that only allows me a period every other month. However, starting in March 2008, I was having pains again (although not as severe). I am still having them and I am willing to try anything (strong pain killers as a last resort) to get them to stop.

Kayce Bozard kayceb@yahoo.com United StatesMay 2008

Concerned about using LupronMy name is Kayce and I'm 22. I was diagnosed with endometriosis back in December of 2007. I have a laparoscopy done in January of 2008. My Dr decided to put me on the lupron where I have a shot every 3 months. My Dr took me off my birth control pills and he told me that I probably wouldn't have children. Depression set in as I accepted the Dr's opinion.

Six weeks after my first lupron shot I had gotten pregnant. Now I'm two months pregnant and I never went back for a lupron shot. I'm scared something is wrong with my baby...and I can't enjoy being pregnant for the first time. If anyone has gotten pregnant on lupron please let me know your story. I don't know what to expect. I switched Dr's and the new Dr is sending me to a genetic specialist to have more detailed test run. Hopefully, everything will be okay. Please if this has happened to you...please give me some advice. Thank you.